Astrogator's Logs

“And I do this for a living, mister,
don’t you understand
that I’m dancing, dancing, dancing
dancing as fast as I can?”
— Oysterband, “Dancing as Fast as I Can”

For the last decade, I’ve lived with relentless, incurable chronic pain on top of the joint and bone pains of aging. It’s an invisible lead weight that often causes me to suddenly deflate like a pinpricked balloon — to the surprise (even, sometimes, disappointment or indignation) of people who expect more of me based on external appearance. I recognize it as a limitation that requires pragmatic resorting to workarounds, though I still get frustrated and angry when crushing fatigue smothers me with essentially no warning. Ditto for my disappearing hearing, that’s gradually depriving me of the pleasure of music, multi-person conversations, and the ability to hear those blurry but all-important subway, train station and airport announcements.

I’ve seen the protests around the “ableist” mentions of Stephen Hawking’s ALS which formed an inevitable part of his obituary. I think that most mentions of his condition, though they’re often lazily phrased and can be read as stigmatizing, are nevertheless a recognition of his determination to get on with his life and accomplish what he wanted to get done. [NB: this lenient view doesn’t include the statements which express the hope that this committed atheist (who knew and explicitly stated – as I do – that a person ceases to exist the moment their CNS neurons stop firing) now finds himself among supernatural beings of the upstairs or downstairs variety.]

Hawking’s body shaped his brain/mind in a complex, feedback loop, as is the case with every single human. He was brilliant, courageous, incisive, driven, opinionated, mischievous, interested in fame and money (who isn’t?). He was also incredibly lucky: he happened to be located at a nexus that made his immense achievements possible (the Theory of Everything eluded him, but it’s pretty clear that reconciling general relativity and quantum mechanics may take a tesseract- or string-shaped convergence).

It was Hawing’s luck, and ours, that he could continue with the vocation that he loved and was so outstanding at – he could not have done so if he were, say, a prima ballerina who got polio (look up Tanaquil Le Clercq, who received a very different treatment from both family and society than Stephen Hawking). It was his luck, and ours, that his temperament and mettle ensured that he could keep his focus on the things that mattered. And it was his luck, and ours, that the devotion of his family and the structures and resources of his society gave him the framework that he needed to be maximally productive (which, incidentally, is the protective cocooning often vouchsafed to male geniuses that conform to certain acceptability standards regardless of other specifics; women virtually never receive such buffering, nor do men who fall outside narrow norms).

We all need Hawking’s steely determination to focus on what we need/want to accomplish, and this means a constant balancing act between our vocation and other portions of our lives and ourselves that matter. We all have to make choices, often painful ones: even under the most favorable circumstances, we will never have enough time and stamina to do even a fraction of what we’d like. This is particularly true for women, whose socially enforced roles, “progress” aside, remain fundamentally antithetical to dedicated visionary pursuits. Hawking’s family to a large extent had to act as an extension of himself; and as is invariably the case in such configurations, they paid steep prices for his brilliance and his ensuing celebrity even as their involvement made them crucial participants in his achievement. He was not a lone star but a planetary system, an ensemble work – as are we all – and his statements show that he was keenly aware of it.

We’ll also all need support equivalent to what Hawking received at one or more points during our lives, even if we start out as “perfect” – and we’ll almost certainly need it not when we’re cherubic infants who are easy to love (and just as importantly, easy to manage). We’ll need it when we’re prickly adults, with notions and expectations, with unwieldy, no-longer-lovely bodies scarred and battered with use. And at that point, absent a titanium-strong family/friends network, all we’ll have is the mindset and safety net of the culture we find ourselves in. I can only wish myself Dr. Hawking’s luck when my time comes – and I certainly plan to do my own utmost as long as I can, pain and fatigue notwithstanding.